Guest post from Cactus Prescott:
Be Nice to Your Kids, They Pick Your Nursing Home !
This old one liner is oft used in many senior communities but also bears a lot of truth. As both you and your parents age, use the information below as a guide and perhaps even to prompt you into action. At some time in our lives, we will likely be tasked with helping to find a place for a parent, loved one or ourselves when their / our physical and / or mental capabilities no longer allow living in ones own private home. Staying in ones home always seems like the most desired choice. Independence, space, privacy and just memories. You can delay this move by identifying the needs and problems of the patient and then addressing them with part-time professional help. Resistance to having someone come to Ma or Dads place a few hours a day will be great, but much less than carting them away to a facility and selling their home.
Oh, please, please believe me!
There are basically 4 primarily types of housing care available for the aged. Some companies combine more than 1 type into a single structure or complex / property, with some, having all types covered. This is a good thing as you may need to “move up the ladder” quickly. They are based on the care level needed and costs rise proportionately.
Independent Living; (IL) Cost Straight from selling the home, with any luck this is where you should go. The bad news is that many folks wait too long to leave their beloved house and are unable to gain entrance into this lowest level of care housing. Motorized wheelchairs, canes and walkers are common. (IL) often features a regular apartment, continental breakfast & hot dinner or lunch. Maid service twice monthly. They also usually have a robust activity calendar. Theater, pro sporting events, group outings and dining experiences.
Those who wait too long to move in may find they are paying for these great programs, yet getting very little benefit from them.
Assisted Living; (AL)Cost Often folks wait too long to get into (IL) and are forced to go straight into (AL) because their health has diminished. The transition from home to (AL) is great and can be difficult. Room size is much smaller and in some cases there are shared rooms. It has a more institutionalized feel. Nursing stations dot the floors and canes, walkers and wheelchairs are the dominant form of transportation. 3 hot meals each day (I believe this is required by law.)
Nursing Home (NH) Daily Cost For when you are unable to care for yourself very little or at all. 3 hot meals each day. Primarily wheelchairs. Limited activities within facility.
Memory Care: (MC) Monthly Cost Facility in constant “lock down”. 3 hot meals each day. Keypad to enter or leave. Totally mobile to wheelchair bound. Group activity is usually old movies, music or TV series in a group setting. Personal one on one interaction as needed.
Rehab (RH) I’m leaving this out as you don’t plan to go to Rehab, Some event puts you there. It is a temporary level of care. Bad news is when you leave, you may be in worse shape and the previous place you lived may no longer allow you to return to the same level of care, If they even have it. (Back to square one!) Stroke or heart attack or major surgery patients are common in Rehab.
Do your homework now instead of later. ALL of these places have different policies for everything.
My two favorite example are meals and “buy in” cost. For meals, if you get a scared look during initial lease signing and are worried about starving they may “up” the standard offer of twenty meals and kick it up to 30 (Lunches or dinners) a month. My father’s place has a dress code for Sundays and he refuses to “bow down to the man” so he just makes his own dinner. He stockpiles meal “tickets” and invites the bride and I over and swear by the FSM he has not used under or over 30 meals per month. My FIL lived in a place where you got the choice to purchase 12 or 25 meal plan each month. BUT if he had his daughters out to visit they couldn’t use his tickets (even if he had 8 extra) and was required to pay $9.95 per guest. Each place has it’s own rules.
There is also the buy in cost, which can be anything from first and last (literally) months rent to over $200,000. Yes, 200 very large, for something called “Life Care”. This will insure that you will be taken care of for life, even if you run out of assets through all 4 (sometimes rehab too) of the housing phases. But wait, there’s more. To get approved by one of these places you have to take a physical AND they want to review your finances / portfolio. Heart problems and cancer are fine, because you die quick. Diabetes or kidney failure are long term problems and very expensive. They may also get you rejected outright. Even after you drop $200K, there is monthly rent.
There are nickel & dime extras is this industry and it makes comparing places like trying to compare mattresses made by the same manufacturer, but at different stores (it’s impossible). Be patient and start visiting and collecting brochures (& free lunches) now. You won’t regret it ! ! ! If you have anything to share please do. Unlurk if necessary. I could have made this a novella, but really glad you’ve read this far.
Steeplejack (phone)
@Richard Mayhew:
The valued commenter’s nym is Prescott Cactus.
Prescott Cactus
Thanks to my bride who proofreads everything ! ! !
One form of housing I failed to mention is group homes. Often hard working immigrants who buy a home and try and make a decent place for those who “fall thru the cracks”. The patients and their families often have no choice because of finances or physical strength to help their loved one. They are out there. Maybe in your neighborhood. They keep a low profile as they are unregulated.
Prescott Cactus
@Steeplejack (phone): THX. I need all the help I can get !
gogol's wife
The shock of Assisted Living is that they still expect the relatives to do a lot (at least around here) — I mean like supplying basic bathroom supplies. So if you don’t have children or close relatives, I’m not sure what you do. I’ve had to do weekly grocery shopping for relatives in AL.
Prescott Cactus
@gogol’s wife:
The charge you. Laundry: charge
Grocery shopping they charge. That or you have to hire a personal assistant.
Ker-ching, the register rings !
raven
We have long term health care insurance, a reverse mortgage and no kids!
raven
@Prescott Cactus: Better Call Saul!
Prescott Cactus
I have provided links with the above to average prices of each type of housing. If you take a look, please feel to chime in and tell me what you think the cost listed is against what you would pay in your state.
My feeling is they are low by about 10 to 20%.
gogol's wife
@Prescott Cactus:
The links are sending me weird places.
Prescott Cactus
@raven:
The no kids thing makes it tough.
I’m an only child, less than 15 minutes away from my 80 something father.
No bragging or backslapping, but I know that my presence in his life makes it easier. He is actually overly generous in his praise. When we meet a neighbor, I get all embarrassed when I get the “Your Dad raves about you”
Iowa Old Lady
Mr IOL and I have been thinking about what to do when he retires, by which time he’ll be in his mid-70s. We know there are good facilities around here. We know people who live in them. But our son and DIL live four hours away, and it seems unfair to stick him with eventually having to be responsible for us at a distance. I’m sure there are good places in the NW Chicago suburbs where he lives, but we don’t know them and we flinch at the idea of things like making new friends. I guess we’re lucky that we can afford to choose what we want, but change is never easy.
Prescott Cactus
First link is good.
I’ll repost 2, 3, and 4 below
raven
@Prescott Cactus: At 66 there is not much I can do about it. I guess I bank on the notion that we’ve never had kids to depend on or look forward to seeing so we just have to play the cards we have. There certainly are plenty of folks in our position these days.
Bobbo
When it’s time for this I am opting for pain medication OD and out. Or maybe a nice cliff somewhere
Prescott Cactus
Assisted Living
Memory Care
Nursing Home
Try these.
YFWP ! ! !
raven
@Bobbo: Fuck a cliff, what if you live?
Felonius Monk
Cost links not working!
My wife’s 95 yr old aunt is in assisted living. This is a wonderful place. She has her own little apartment, goes downstairs to a dining room for 3 meals per day. Wonderful entertainment and activities. They monitor her constantly.
But it ain’t cheap — roughly $4700/month.
Yutsano
Baruch dayan emet.
Steeplejack (phone)
@Prescott Cactus:
When you do the link thing, make sure you overwrite the HTTP prefix that FYWP provides in the URL field. If you inadvertently get duplicate HTTPs, a nonsensical Balloon Juice link is the result.
(This advice applies to anyone trying to do a link with the “Link” button. Entering a naked URL puts your comment in moderation.)
gogol's wife
@Prescott Cactus:
The AL looks about right for CT.
Prescott Cactus
@Iowa Old Lady:
Being four hours away would be tough. Leaving an area that you lived in would be tough too.
Chicago area should provide great facilities if you want. . . . But do you want to change your life that much. Tough questions we need to think about now rather than later.
My father has blossomed in Independent Living even with bad hearing and a slight difficulty speaking because of a stroke. He always says ” There are a hell of a lot of people here worse than me.”
Ruckus
@raven:
No kids, no wife, 67 this month.
@Prescott Cactus:
We had my dad in an Alzheimer’s group home run by 2 Vietnamese women. Unbelievable care. They came to his funeral and cried like he was their dad. They are saints. They had 5 homes set up for 4-5 clients each. Meals, round the clock attendants. And we could afford it. From some of the stories I’ve heard this is unusual.
Prescott Cactus
@raven:
Certainly. Just because you had children doesn’t mean the relationship is going to fantastic as we age. I doubt few people ever have kids thinking “you’ll have to change my diaper someday, you little shit”!
Iowa Old Lady
@Prescott Cactus: We’d be happy in Independent Living. Around here, that means a separate house or cottage. We both hate yard work and home ownership is a pain.
We’re in the process of updating our will and various powers of attorney. Also we already made a list of our assets and who to call about each and passed that along to our son.
raven
@Prescott Cactus: Yea, I mean you are giving great information for a lot of peopls.
Prescott Cactus
@Steeplejack (phone): Thanks Steeplejack. As a non-front pager I just type these up and try them in a HTML reader before hand. I make them into a PDF and Richard M does all the work behind the scenes afterwards. NO foul on Richards part, it’s the security software that likely tampered with the links.
Or maybe I just plain ol’ messed up. . .
The new links in Post 15 are good to go (?)
Ruckus
@Prescott Cactus:
Any group situation can have that effect. I seem to be spending a lot of time at the VA these days and at any clinic sitting in the waiting room for 5 minutes tells you that there is always someone in worse shape no matter your issues.
Olivia
My mom was in assisted living and she loved it because she was pretty free to do what she wanted and friends would bring her booze. She is a mean drunk and she was raising hell with the staff, making false 911 calls to report elder abuse when they came into her suite to give her meds and clean. So we moved her from place to place with the same results until she drank herself sick and ended up in a nursing home. Now she can’t get the booze and is still raising hell with the staff. We have been trying to move her to another place closer to family but they always ask for records first and now nobody will accept her because she is so horribly behaved. She is relatively healthy but she is a 91 year old blind, mean, substance abuser and she has us all exhausted. Where do you house someone like this?
Steeplejack (phone)
@Prescott Cactus:
Those work fine.
Aleta
@Prescott Cactus: Thanks to you and yr bride for doing this. Once the unexpected crises begin to go off, it’s harder to take in all the necessary information to make so many decisions at once.
Prescott Cactus
@Felonius Monk:
My father’s place is Independent and Assisted. The Assisted side uses a GE (General Electric) monitoring system by placing motion sensors in the bathroom and kitchen. They know if you are going to the bathroom to much you may have a kidney infection and if you don’t go to the kitchen enough your eating may be light.
Orwellian actually, but cool.
Steeplejack (phone)
@Prescott Cactus:
I can’t believe a PDF is the best way to submit. Seems like overkill. A Word document should be fine.
Prescott Cactus
@Bobbo: My way:
Stumble out to the desert with 2 bags of Purina Coyote Chow. Lay down on the first and sprinkle the second over myself.
YMMV
muddy
@Prescott Cactus: I was a late middle age whoops baby long after their planned group of kids were grown. My dad was congratulating himself one day about how he had the sense to have a child late in life so he had someone to care for him. My response was along the lines of, Good planning Dad, too bad for me my father will die while I am yet young.
That shut him right up, haha!
Prescott Cactus
@Yutsano: A sad day. A great man !
Prescott Cactus
@gogol’s wife: Pricing for Arizona seems low.
This is God’s waiting room out here though. . .
gogol's wife
@Olivia:
Wow, that’s bad. I’m sorry!
Prescott Cactus
@Ruckus:
You were blessed ! ! ! I’ve heard more good than bad. The family takes a look at the other patients when they make initial contact. Passing the smell test has extra meaning in this situation.
Prescott Cactus
@raven: THANKS !
@Ruckus:
Hopefully the patient can draw something positive from that. We never desire to see others suffer, yet if our bad day can make someone else’s better.
Once you start thinking NOBODY has it worse than me. . . it’s not good !
Prescott Cactus
@Olivia: Olivia, I wish I knew and I hope things get better !
I’m reminded of Catholic grade school. . . Everything goes on your permanent record.
Memory care may be an avenue to explore. It’s sad, but there are a minority of Alzheimer’s patients who get violent as the disease progresses. Even with bad records from a nursing home a memory care facility may forgive that. . . Do try!
J R in WV
Prescott,
Thanks, this is very helpful to aging retired persons.
The Assisted Living link is borked by having a link to the article in front of the link to assisted living data.
Mrs J’s mom, my MIL, stayed in a nice independent living -> assisted living center in town, so we know where that is; they cost more to move in, as if buying a condo, but that is “returned” when you leave… presumably often to your heirs. Although the seniorhomes.com site appears to be unable to understand that metro areas have multiple zip codes, and frequently a large senior facility may even have its own zip code, otherwise they look helpful.
My dad also lived in a very nice assisted living center in Houston TX. He had a fall late one night, didn’t call for help moving to the toilet, broke a hip, went for hospice not long after that.
We were unable to pry a bill for many months of service from the center, as we tried to settle his estate. I guess they felt they had failed him in some ways, which was kind of so. I would rather have paid them. But I suspect many people would have felt an uncontrollable urge to sue someone when the bill showed up.
The center was named for one of the residents, I suspect it was founded to take care of that resident, and the rest of the population was to finance that person’s care.
Prescott Cactus
@Aleta:
You’re welcome.
That’s part of the reason I’ve asked to share all this with you. Awareness of what we face regardless of we realize it or not.
Discussion to hear other peoples thoughts and ideas, along with results of how things worked out.
We are all in this together.
gogol's wife
@Prescott Cactus:
Your posts are very good and helpful.
Prescott Cactus
@Steeplejack (phone):
Alas good sir, I ride a Macintosh.
I’ve created links within the first 2 stories (shamelss plugs)
Hospice
and
Dying Process
Prescott Cactus
and you can see, I messed the blockquote up on post 44.
Loose nut behind keyboard.
Prescott Cactus
@gogol’s wife:
Thank you !
My wife and I are trying to decide our next move.
Do we want to downsize into another house and take care of it and then have to sell in a few years?
Should we sell now and rent, having to move again (into Independent Living) when we need a little more help?
raven
@Prescott Cactus: We did our major addition with the future in mind. While we do have an upstairs and a basement we put the new master suite, big bathroom with walk in shower all on the same level.
Prescott Cactus
@muddy: Good planning Dad, too bad for me my father will die while I am yet young.
That shut him right up, haha!
germy shoemangler
Olivia de Havilland turned 100 yesterday.
Prescott Cactus
@J R in WV:
I’ve fixed the borked links and good ones can be seen in post #15. Pilot error.
The condo like “buy in” helps maintain a good cash flow and a keeps the place from getting run down. It also helps the family with some capital return after death. It’s a pretty solid and broadly used method of operation.
Sorry to hear of your fathers passing with the broken hip. I agree that the may have expected a lawsuit. Sadly so common that is today.
Hope all stays well with your MIL !
Prescott Cactus
@raven: Keeping the home you love and doing the remodel so that everything is on one level covers a lot of bases.
Prescott Cactus
@germy shoemangler: I hope they are all good years too !
100, geez. . . I’m over 1/2 way there.
Prescott Cactus
As I’ve caught up, I’ll re – recommend this book:
Being Mortal: Medicine and What Matters In The End
by Atul Gawande
Hat tip to the bride for reminding me !
Mai.naem.mobile
@Prescott Cactus: Group homes are regulated in Arizona. They’re even covered by AHCCCS. We have a family friend who lived in one for about ten years after a bad stroke. If you need a nursing home I would go to a group home instead. Caregiver to patient ratio is 5 to 1 or less. Way better than in a nursing home where you might have an aide with 10-12 patients. Also, if you a have family support in-town, I would hire a caregiver, even try and do a live-in situation.
J R in WV
Mrs J has frequently said “I’m only leaving this place (our rural hide-away home) feet first on a slab!” I think this is a slight exaggeration, but I’m not sure. She has a streak of stubborn, and we have spent the last 20 years making it more comfortable. Not necessarily more habitable by elderly, mind, just more suitable to a couple of hermits.
Fortunately, we do know of a very comfortable independent living center with attached assisted living center nearby, and have had relatives at a larger center that included nursing care as well.
Prescott, (or Mr Cactus !) thanks so much for your contributions here! So very helpful for us old farts!
Steeplejack (phone)
@Prescott Cactus:
Well, you screwed the blockquote, but the links are okay.
And, jeez, I said Word because it’s nearly ubiquitous, but any text file with line wrap will do. You must have some word processor on your Mac, right?
dnfree
My dad and his wife moved to a wonderful facility with all levels of care. They bought in while they were still able to make the decisions and the move. As this says, great facilities, very good food, lots of activities. However, when my dad eventually needed rehab and went to the “Medicare Unit”, we found the small shared rooms you mention, and not enough staff to really attend to the residents.
When it came to my dad’s end of life care, his wish was not to be kept alive if he developed dementia, which he had. So there he was, second time around with aspiration pneumonia in a matter of months, an order for no food by mouth, and the family’s desire was to let him go via starvation rather than provide a feeding tube. (This was also his expressed wish back when he could have one.)
He would never have wanted to be one of those people slumped in wheelchairs around the nurses’ station. But we found the staff kept trying to feed him and we weren’t able to be there around the clock. It was a difficult last month. So that’s a good thing to discuss with your facility as well–will they be willing to let someone go when it’s time. Even hospice had no influence.
Prescott Cactus
@Mai.naem.mobile: Thanks for the heads up. I probably should have known that. I guess I just imagined that not all of them are regulated. . . A few flying under the radar.
I agree with the idea of hiring a caregiver whenever needed if possible. It can keep you at the same level of care and prevent having to pay more and actually get less.
Having at least one relative or friend close by is ideal.
Prescott Cactus
@J R in WV:
You can call me Prescott, or you can call me Mr.Cactus. You could also call me an old fart, because I’m that too !
You are very welcome !
Prescott Cactus
@Steeplejack (phone): Yes, the Mac has a Pages program. To great surprise to you may be that I am barely semi literate in HTML and that is how I screwed the bolding in the original tags today.
So I guess that I can ask the word processor program “Pages” to review my draft in HTML ?
Remember, I don’t have many guest posts left in me. . .
Josie
My mother was in a specialized wing for Alzheimer’s patients in an assisted living facility. It was great – lots of personal care, three meals and snacks, activities, a nurse on call. The cost started out at $3000 per month and finally in her fourth year was up to $3600 per month. Luckily she had a small long term care insurance plan, and that plus her social security took care of much of the cost.
Prescott Cactus
@dnfree: I’m sorry your fathers end of life care didn’t fit you or his needs. Especially that hospice wasn’t more aggressive in helping.
The mega complex that guarantees all levels of care with a large “buy in” makes it difficult to leave their system if you are unhappy with the care they are providing or any other reason.
My FIL had a period where his “All Care Facility” had to send him off site due to a Medicare rule during a re-hab. We were livid. They did not have the ability to care for him so did what was best, but also what was most inconvenient. His 80 something wife had to drive (Ah!!!!!!) 5 miles each way to visit daily.
My dad’s IL & AL place had a buy in of around $10,000 and they pro-rated a return if he left at God’s wishes (died) within the first 3 years and zero if he decided to move out. It’s just enough to keep you there and not enough to empty your pocket book.
Prescott Cactus
@Josie:I’m glad things worked so well, Josie. Finding a place that is nice and affordable is often difficult, especially for memory care patients.
Miss Bianca
You would post this as I’m reading “Being Mortal”, wouldn’t you? I’m off to perform the Fool in King Lear – a play about some classically disastrous end-of-life care decisions – and I’ll catch you up much later, PC!
I'mNotSureWhoIWantToBeYet
We were fortunate in that we were able to get a Long Term Care policy for my MIL shortly before she needed it. My SIL paid $5k toward the policy (via her company’s contribution), we paid the rest. It paid $200 a day for up to 3 years. It made a huge difference toward paying for the in-home aid we had for about 5 years (the insurance was used for the last 3). Even after selling their $600k house, we would have been hurting without that policy. She was in a nursing home for about 18 months after we were no longer able to care for her at home (we would have needed 2 aids due to her Parkinson’s and the cost would have been prohibitive).
There are so many issues to consider when the time comes. Spending a few hundred talking with an attorney who specializes in elder-care issues can be well worth it because the rules and issues can vary from state-to-state.
Good luck, everyone.
Cheers,
Scott.
Prescott Cactus
@Miss Bianca: You have been horribly miscast !
“When we our betters see bearing our woes,
We scarcely think our miseries our foes.”
Prescott Cactus
@I’mNotSureWhoIWantToBeYet: Scott,
Lucky you got the policy in place before you MIL began declining.
I think it’s sage advice to see an attorney, with children or without. The need to get everything tied down before the storm makes so much sense.
I'mNotSureWhoIWantToBeYet
@Olivia: Wow, that’s rough. I’m sure your worried sick about her.
My FIL was in a pretty bad nursing home for “rehab” after a hospitalization. The overworked staff were crushing his time-release morphine and lots of other pills (he had swallowing issues) and was basically a vegetable most of the time he was there, until we could get him out.
I’m sure too many people would want to medicate her to make her more compliant. It sounds horrible, but maybe something like that is actually worth investigating in her case.
:-(
Good luck.
Cheers,
Scott.
Prescott Cactus
The bride reminded me of, yet I didn’t add till now is that at my Dad’s Independent Living facility they have a “resident committee” and Ambassadors who kind of (helpfully) haunt you the first week in.
Someone to guide you into the stream of life at the place. It’s a really nice thing. The Ambassador always introduces the new resident to everyone and you get a easy entrance into your new home away from home.
WaterGirl
@Olivia: I don’t have any answers, but I will tell you that a good friend has a mom of a similar disposition and they had to move her from place to place. Now the mom is on anti-anxiety meds or anti-depressants and it’s like she is a new person. Maybe food for thought, or not, but I figured it was worth the time to type it out.
Steeplejack
@Prescott Cactus:
You’re overthinking it. You don’t need Pages to “review” your HTML. FYWP recognizes a relatively small number of HTML codes—bold, italic, blockquote, “dressed up” hyperlink and a few others that you don’t need to worry about. Click on “Basic HTML Tips” above the comment box on any thread and read that; it’s very helpful.
Your problem is that your word processor—like all of them—uses its own internal codes for bold, italics, hyperlinks, etc.—which typically aren’t recognized in HTML. You’re better off writing your document as a plain text document and manually inserting the HTML codes that FYWP wants to see. Examples:
Remember that you always need to use the slash for the closing code: <b> to start a bold, </b> to end it.
You could even copy the snippets of your guest post that need to be formatted into the comment box of an existing Balloon Juice thread and use the buttons above that box to add the formatting commands. Then copy the results back into your Pages document. Once you’re done, send that to Mayhew.
Using a PDF is like driving your car 50 feet down the driveway and back just to check the mail box.
Hope this helps.
WaterGirl
@Prescott Cactus: In Pages, choose File -> Export to and then select the format you want to export to – word, text, pdf, epub, etc.
Prescott Cactus
@Steeplejack: It in fact does help, and I appreciate it. Part of my thought process with the PDF was I didn’t know if Richard M used Pages or Word. . . but everyone can open a PDF. . .
A sad irony is that I have a neighbor who drives his golf cart the 15 feet length of his driveway to get his mail from the mailbox. He’s not doing well.
Ruckus
@I’mNotSureWhoIWantToBeYet:
You could have had family members who fought everyone else, including the written wishes of the patient, to allow the use of some drugs to help alleviate some of the symptoms of Alzheimer’s. Or Parkinson’s. On religious grounds. That’s fun. The poor person with the disease is losing or has lost what little dignity and any normalcy they might have had in life and some asshole is trying to solve the issue, with talking. With someone who can’t remember their own name, what day it is or even the concept of day.
Steeplejack (phone)
@WaterGirl:
I’ve got an e-mail coming for you. Complicated month just concluded.
Steeplejack
@Prescott Cactus:
Everyone might be able to open a PDF file to read it, but not everyone has the software to edit/change a PDF file, which Mayhew presumably would need to do to post your piece. A vanilla text file is much easier to deal with.
WaterGirl
Prescott Cactus, thank you for this post.
No spouse, no kids, no parents, and I’m not a spring chicken. In the plus column, I own my house outright, I have health insurance through the University, and I signed up for long-term care insurance through the University when they offered it when I was 35 or 40. But it’s humbling to know I am on my own if something happens.
WaterGirl
@Steeplejack (phone): Funny, I almost sent you an email message when I saw your comment to Richard: “The valued commenter’s nym is Prescott Cactus.” I laughed.
Lee
My FIL has been in AL for many years now. In 3 different places in that time.
I think the last is the least expensive but also has the best care. One thing that makes it least expensive is they run all his drugs thru a large provider. If we were to do it over again, we would only look for places that do this as it reduced his drugs cost considerably.
amygdala
@WaterGirl: If you haven’t done so yet, could be helpful to think about which trusted friend or perhaps cousin/niece/nephew etc. can serve as your health care DPOA should you get seriously ill and need a decision-making surrogate. And then take care of that paperwork and make sure your PCP, etc. have copies.
Prescott Cactus
@Steeplejack: Sometimes I make life harder than it is. Not just for me, but others too !
Prescott Cactus
@WaterGirl: You’re welcome ! You have been an active participant and contributor to my “recent talks about the olds”. I appreciate it.
And again to Steeplejack. Thanks ! ! !
Prescott Cactus
@Lee: That’s interesting Lee. I never realized that could be part of the equation. Good insight !
Prescott Cactus
@amygdala: Sounds like very sound advice for Watergirl.
WaterGirl
@amygdala: I’ve had part 1 (knowing who I would trust that responsibility with) done for about 10 years – my niece. I’ve even spoken with her about it, and she is fine with the idea.
I just can’t seem to get myself to actually DO it. sigh.
Capri
In the past 3 years my mother has gone into a rehab facility due to broken bones two times. In the first instance she was still living in her house, and in the second (1 month ago) she had moved into the Independent Living portion of a multi-tier facility. The first time we had to shop around to find the closest one that could accept her, and the paperwork/insurance issues went on for weeks. In the most recent instance, she was moved seamlessly through the various levels of care. The place is a notorious nickle and dimer – $25 for someone to wheel her around the grounds, for example, but very little hassle. Another instance where the sooner the move was made the better,
She was very resistant to moving because she didn’t know anyone and was worried about making new friends. However, the place is excellent at making sure everyone gets involved and has a social life.
Prescott Cactus
@WaterGirl: Baby steps. Could you get your thoughts on paper over this weekend ?
MomSense
I moved my mom into my house two months ago. It’s working out well as long as we don’t discuss Democratic politics. She’s a Sandernista and I’m a Hillzilla.
She is visiting friends for a month and then will come home to have some major eye surgery. We aren’t activating her long term care yet because she is so healthy otherwise.
She says now that when the time comes she wants to go to a nursing care facility but I think it makes more sense to have visiting nurses as needed. Fortunately we don’t have to make that decision for awhile.
amygdala
@WaterGirl: That’s significant progress, so don’t beat yourself up too much. It’s a bit of a strange process.
Prescott Cactus
@Capri: Glad your Mom got settled in comfortably after what was a trying couple of years and hospital visits.
Having an idea where you or your family members next move could be is great, but the unexpected, like rehab and broken bones makes life’s plans unpredictable.
Bill_D
A lot of people fall between the AL and NH levels of care. AL places only provide a limited level of care, perhaps 2 hours a day max. You can get in-home assistance for more hours at home at your own expense, but you can also get it while in AL if the place allows it. That allows one to stay out of a NH and have a more normal life when a NH would really be overkill as well as profoundly depressing.
My father had Parkinson’s and eventually needed 24-hour assistance, due in part to occasional needs during the day and night (bathroom, dressing) but also due to serious fall risk at all times. Somebody needed to be there 24/7 as he would need help or at least supervision when going to the restroom which could happen at any hour, or when getting up for any reason. We arranged this at great expense and it kept him out of nursing homes almost all of the time after he went into AL. Fortunately we found a reputable outfit that provided good care with almost no glitches, and both AL places allowed this.
Twice he had to leave AL due to a medical crisis. The first time he went to a hospital then a nursing home, and was not allowed to return to his previous AL due to being worse off (swallowing problems). We then got him into a really good AL place where he spent the short remainder of his life. He was fortunate during the second medical crisis that his doctor recommended hospice which was completely in accordance with the wishes he had expressed over the decades as well as recently (no feeding tube). He returned to AL under a hospice arrangement and with continued in-home care. The only glitch there was that the dedicated caregiver was very attached to him and for a little while kept trying to feed him against the directives of the hospice folks, which could have led to his choking to death due to his difficulty in swallowing. In the end it seemed the caregiver blamed us for ‘letting him die’. Better that than a caregiver who doesn’t care.
All this care cost enormous amounts of money – easily $10K a month combined cost once he got to the 24/7 level. Fortunately Dad was a beneficiary of the California real estate market over the preceding 35 years, and the proceeds from the sale of his previous house were enough to fund a level of care which was the best he could have reasonably obtained without going gold-plated. He absolutely *hated* his two stays in nursing homes, and staying there surely would have killed him.
And on a related topic Prescott pointed out, Dad did wait too long to move into the retirement community which preceded AL. He was already too infirm to really enjoy the amenities, and just before his house was ready to move into he broke his hip and never fully recovered. He’s very lucky that family was available to empty and sell his previous house and have his remaining belongings moved, or he would have lost both houses and all possessions due to his already diminished mental capacity. Ditto for moving into AL.
First moral of the story is to downsize before you really need it. Dad was behind the curve and that cost money and disappointment, as well as huge amounts of work and stress for my wife and me in sorting through a lifetime of belongings and making innumerable decisions under time pressure.
Second moral is, get a time machine, go back 40 years, and buy a house in California when they were still affordable. That’s the only way you’ll have the $$$ to have a decent chance of getting decent end-of life living and avoiding the risk of eventually being warehoused in a crummy Medicaid-level nursing home.
I'mNotSureWhoIWantToBeYet
@MomSense: I’m a big fan of keeping oldsters at home with you as long as your able, but not a week longer.
J was very close to her parents, so when the time came that they had to sell their home (they lived 500 miles away, were both in their early ’80s with mobility issues, confusion, etc.), we wanted them to live with us while we investigated other options. They were with us about 7 years. For about the last 4, we had an overnight aid here to keep an eye on them if something came up (they usually didn’t have to do anything, but it let us sleep). Her father died at 88 and she died at 90. Her last 18 months or so were in a nursing home. We never had them in assisted living or “continuing care” because it didn’t seem to be the best fit for them and our situations.
While it was easier in some ways when she went to the nursing home, it was harder in others because J would visit her every day after work and spend several hours with her every Saturday and Sunday. It was exhausting for her because she had to check up on what the nurses and aids were doing, talk with the other patients and their family members (e.g. talk with our neighbor and hear about her mother who was in her 90s, sharp as a tack, but was very unhappy and had decided she was done so she refused to eat or drink), and basically have as much or even more work compared to her living with us.
I’m glad your mom is doing well. I hope she continues to do so. Find ways to take care of yourself and take time off. It’s rewarding caring for parents, but it can be terribly exhausting and depressing, too. Get help if you can – nobody can do it alone.
Cheers,
Scott.
Prescott Cactus
@Bill_D: Thanks for taking the time to share that. Your father was fortunate in many ways. Having you in his life was a major one.
.
Your ability to not only forgive, but embrace is inspiring. Truely.
I fully agree with the first moral of your story and we are striving to reach it ourselves . Being in a retirement community we see the unsuccessful attempts at being well enough to maintain a home today and waking up dead tomorrow morning. It doesn’t work. Period. The time between those is two events are often huge.
The inability to downsize often makes it impossible for the patient to “sort things out”. This is exactly what happened with my father. It was heartbreaking. At the time he was essentially unable to help.
The second moral of your story, well…
Again thanks,
Prescott Cactus
rikyrah
This was very informative. Thanks for posting this. ?
Prescott Cactus
@MomSense:
@I’mNotSureWhoIWantToBeYet:
Scott’s advice is wonderful.
If you can keep family at home, stay sane and get outside help as needed, great. If family dynamics, politics or religious beliefs make the stay impossible, you’ll know.
Making sure you are rested, eating good and healthy are a primary goal. Caregiving is a full contact sport. It wears on you like a marathon.
If your mother is relatively healthy without major issues perhaps Mom can enter a lower level of care than a nursing home and get additional individual care as needed with the savings.
Thanks Momsense & Scott !
Prescott Cactus
@rikyrah: Thank you and glad you enjoyed it.
As always, I learned a lot things, especially other ways of looking at things.
Perspective, I guess.
Bill_D
@Prescott Cactus: Thanks for the kind comments, Prescott.
Yes, my father was unable to help meaningfully even before he broke his hip. My wife would periodically spend a day with him while I was at work, and for maybe four hours they’d go through a few items which he’d slowly consider. Then he’d be done for the day. At that rate it would have taken decades to go through all his stuff.
With Dad being in a nursing home for a couple of months, we finally had freedom to go through a 2500 square foot house, dispose of a lot, pack up a lot for moving to his new place, and move some things to my house or garage. Due to his limited capacity, we coordinated with him only on important or sentimental items but erred on the side of caution in making disposal decisions. We ended up saving a lot of stuff that he never used for the rest of his life, and I still have some of his stuff in storage and in the garage that I need to deal with.
In any case, by the time he got out of the nursing home after breaking his hip, we were able to move him right into his new downsized house in the retirement community, where he then lived with only minimal in-home care for a time. He had a call button on his wrist in case he fell, and when he fell three times in one day is when social services got involved and he went to full-time in-home care.
Fortunately, it was his decision to leave his new home and go to assisted living a few months later. At first he planned to move back to his house, but after a year he finally agreed to sell that house and commit to AL. Then the rest of the story unfolded as I described.
I’ve been very down on nursing homes in these posts but it really depends on a person’s condition. If you want to have personal possessions, time and space to to yourself, and not feel like you’re in an institution, then a nursing home sucks. If you’re incapable of having that kind of life then it’s the only choice.
One other lesson for me is to move aggressively on paring down my possessions very early in retirement (I’m already doing a bit in fits and starts years in advance). I expect to go first in deterioration and death, and I don’t want to burden my wife the way we were burdened by my father.
Olivia
Thanks to everyone for the suggestions and encouragement. My mom is on antidepressants, which have helped a lot. She has been evaluated for dementia and doesn’t have it. She has been like this my whole life but with her being disabled and confined, her bad behavior is focused on fewer people in a smaller sphere.
Prescott Cactus
@Bill_D:
Our lives, yours and mine are somewhat mirrored. My father had fallen a couple times. I was out of state working and my wife first noticed a small bruise over his eye. “I ran into a cabinet” he said. She brought him some soup and Gatorade as he complained of feeling under the weather. When she returned the next day it was if he went 15 rounds with Ali. “Irish sunglasses” we call them, the circles beneath his eyes. “You don’t have to tell Prescott about this, he said to her”.
I was home the next day. He claimed he fell in the driveway getting the mail. I asked “show me your arms and hands? How come you don’t have any scrapes on them”? after some debate, we postponed our lunch date for the next day.
We were on his porch when he had the seizure. He must of been having them for some time. He gently twisted off his chair and hit the ground. It was like he was getting hit with 220 or 221 volts, (whatever it takes). In the ambulance and inside a CT (or was it MRI?) scanner within 23 minutes. Amazing Fire Dept ! ! !
They told me this seizure was being caused by the 3 major strokes he had had. (We knew about one). They also said his heart attack didn’t help matters. (We didn’t know he had had a heart attack). Home within a week we decided on IL as the many many seizures he had took a toll on him. He sat watching as we packed the cars after finding a great place close by (We were only 15 minutes apart before).
He almost lost the place, as the lease signing broke bad. When going thru the lease, clause by clause, the director mentioned that “this states that residents don’t discuss their rental payments with others”. He floored me when he said, “I believe that’s against the Constitution!”. I near exploded. The bride kept cool and collected. I was ready to bring two car loads of belongs to his front lawn and drop him and said items onto it. . .
Later, the Sales guy told me that our sign wasn’t bad compared to some. . . He gave Dad credit for the “that’s against the Constitution!” line.
Five years later he’s doing fairly well. The bad news is I now think in months instead of years. The seizures were stopped instantly with a generic med. Now it’s CHF, or congestive heart failure. 50 feet of walking leaves him breathless. One thinks they can prepare for the loss of a parent, but my Mom’s death proved that a 3 month notice and 5 later years of quality life helped little.
We too are getting rid of the flotsam and jetsam of our life’s. No kids to help us, we need and are prepping for the future, trying to stay one step ahead.
Thanks again Bill_D
Prescott Cactus
@Olivia: I hope things stabilize and that medication (without total knock out effects) can bring her to a happy place for both you and her. This stuff ain’t easy.
Family caregivers walk a steep and lonely road. Be strong and have enough peace in your heart for you and Ma.
PC
Olivia
@Prescott Cactus: Thank you.
Prescott Cactus
@Olivia: you’re welcome ! Stop back later if you need an ear to bend. I’ll check on this for a couple weeks at least.
Peace-out !
Prescott Cactus
P.S. I just looked back and indeed they do close post for comments. . .
My bad. . . Don’t know how long it takes, but. . .
Miss Bianca
@Prescott Cactus: Are you saying you think I’d have made a better Edgar? ; )
maurinsky
My father has Parkinson’s and is a lot of trouble for my mother to care for him. As soon as he was diagnosed, we (my older sister and I) urged them to sell the house and move to a single floor dwelling, but they won’t. They live in a split level, he has to climb stairs to go to the bathroom and descend stairs to go to the kitchen. All of this is complicated because my youngest sister has JRA and lives with them, she is unable to have a full-time job, and is (I believe) getting disability.
My father would love assisted living, my mother would probably kill herself, because she is very nearly agoraphobic.
It’s very difficult to talk to them about this stuff, because my father gets angry and my mother is not always honest about what’s going on.
Carol Van Natta
My now-deceased father, with Alzheimer’s, aphasia, and a host of health problems, moved from independent living (IL) to assisted living (AL) to a rehab (after a hospital stay). The AL wouldn’t take him back because of fall risk, and in rural Alabama where he lived, the only alternatives were really nasty warehouse nursing homes or renting a cheap apartment and hiring 24-hour caregivers. There were zero hospice care facilities in a 70-mile radius. We chose the original IL place because they let him keep his cats, which were very important to him and his quality of life, but the IL place was badly run. My father was also vulnerable to female attention, which enabled another IL resident to get about $50K out of him before we offspring (none of whom lived within 1,000 miles) could get a conservator/guardian (lucky me) appointed by the court. Fortunately, my father had a pension, social security, an IRA, and a trust from his days as a nuclear engineer. The premium AL place cost about $6500/month; his apartment and round-the-clock caregivers cost about $10K/mo.
I bring all this up to mention another service available if you have more money than time, and that’s the care services that specialize in geriatric clients. We found a good service in Alabama, with staff that had medical background as well as had worked in (or even ran) ILs, ALs, and/or NHs, plus knew the area medical providers and Medicare people. They weren’t cheap, but they made all the difference when making the poorly-run IL facility behave, or finding an apartment fast when the AL evicted him, or understanding the Medicare rules about repeated visits to the rehab facility.
My elderly mother, OTOH, would absolutely fucking HATE living with other people in IL or AL, so we’re setting her expectations now that she’ll have to compromise and allow caregivers to come do things for her (cook, drive, etc.) and stay overnight, as needed. She has enough money socked away that she can afford it, and I live close enough to easily drop in and check that the caregivers are doing their jobs.
Prescott Cactus
@Miss Bianca: I was thinking Cordelia, the nice daughter. Bad news is that is some versions her neck gets. . . how you say, “stretched?”
Prescott Cactus
@maurinsky: You are in my thoughts and prayers. You seem to have a lot of things that are going on that make a easy solution unattainable. I have some worry that if your folks do decide on a move to a place that your sister’s age may make it an unhappy place for her.
Would a chair lift for the stairs be a possibility ?
Prescott Cactus
@Carol Van Natta: Where you live has a great impact on the number of services and housing options available. Florida and Arizona are considered “God’s Waiting Room” because of the migration of retirees. Tons of options and facilities are available there.
Having the financial capacity and thinking outside the box when considering an apartment and 24 hour care vs good Assisted Living gave you an option many could not afford but also for those who could afford, they may not thought of it or have gone to the extra trouble of coordinating. Finding and using a resource that knows the in’s and out’s of Medicare is supreme. When a major event happens many different possibilities can result and each has it’s own new rules and regs.
Setting up Mom’s expectations now and having these discussions beforehand helps. I hope that things work out well in you and your Mom’s future.
Prescott Cactus
@Carol Van Natta: I worked in nuclear power plants too, but not as an engineer. Mostly doing maintenance work, bouncing from plant to plant when they did
refueling outages.
Prescott Cactus
Sorry this is a late addition because it is somewhat relevent. My Dad who is in what I consider a fairly nice Independent Living place just received a new “unified lease”. The different buildings they own throughout the US all had different leases. Now it’s “one size fits all”.
New lease is over 10 pages long and part two, “Addendums A-F” are over a dozen.
It’s not personal Sonny, it’s business.